Sentara recognized for highest level of epilepsy care

Ethan Boudreau had his first seizure at age 21. It happened on Christmas Eve, while he was in the backyard of his parents’ house in Virginia Beach, Va. He doesn’t remember the episode, or why he was outside. His parents found him face-down in the grass and rushed him to the emergency department.

After having another seizure a month later, Boudreau was diagnosed with epilepsy. His attacks, which made him lose consciousness and convulse, began to occur every few months. Sometimes he injured himself. Once he had a seizure in the shower, fell, and hit his head. His mother pulled him out, the wound bleeding profusely. After his seizures, he always felt exhausted. He would experience “destroying headaches” and “have to lie in bed for days on end.”

Epilepsy changed Ethan’s life, he said. He had trouble focusing. He no longer wanted to socialize with friends, and he stopped going to concerts. His relationship with his girlfriend unraveled. He became a recluse.

“It felt very diminishing,” Boudreau said. “It changes who you are in a lot of ways.”

Epilepsy can’t be cured, but it can be treated. After seeing a neurologist at Sentara Health, Ethan began taking medications to control his attacks. The medications worked for about five years. Then suddenly his seizures returned.

Last year, Boudreau’s neurologist recommended surgery, and Boudreau had a responsive neurostimulator (RNS) implanted under his scalp. The RNS is about the size of a key fob. It monitors brain waves, responds to abnormal activity, and helps control his attacks.

When he had his first seizure with the device, Boudreau recovered quickly.

“It was unbelievable,” he said. “I was out cold for maybe a minute, thirty seconds max. And I woke up and administered my own rescue medication.”

Now his seizures are a “completely different experience.”

Boudreau said, “I feel like I’m back to myself.”

Ethan Boudreau received advanced care from the Sentara Epilepsy Center.

Becoming a Level 4 Epilepsy Center

In March of this year, the Sentara Epilepsy Center became a Level 4 Epilepsy Center, the highest level possible. The accreditation recognizes the advanced care offered to epilepsy patients like Boudreau. Sentara now has the only Level 4 Epilepsy Center in Hampton Roads, Va.

“We all love what we do and we always strive to offer the best care we can,” said Daniel Graf, M.D., Boudreau’s neurologist and the medical director of the Sentara Epilepsy Center.

“This Level 4 designation is recognition that we’re offering the best care available.”

As part of the three-year process to become a Level 4 Center, the Sentara Epilepsy Center demonstrated the capacity to provide the most complex forms of monitoring and treatment, including a range of surgical procedures.

Boudreau said his neurology team “feels like family.”

“Sentara has done a wonderful job,” he said. “They make sure you feel as comfortable as you possibly can in the most uncomfortable situations.”

Although much of the Sentara Epilepsy Center’s monitoring technology is located at Sentara Norfolk General Hospital in Norfolk, Va., advanced epilepsy care is available throughout Sentara’s network of hospitals and clinics, which span Virginia and northeastern North Carolina.

“If you’re part of the Sentara system, you can get care from our world-class center,” Dr. Graf said.

Daniel Graf, M.D. (left), medical director of the Sentara Epilepsy Center, talks with Neurodiagnostic Technician Ariel McKee at the epilepsy monitoring unit.

One of the most widespread brain disorders

Epilepsy is one of the most common neurological disorders, affecting more than 3 million people in the U.S., or about 1% of the population.

The disorder can develop at any age, though it’s most common in the very young and very old. Characterized by surges of electrical activity in the brain, it can result in recurring seizures. Causes vary and include traumatic injury and genetic conditions.

People with epilepsy have an increased risk of early death. One in 1,000 individuals with the disorder experience a sudden, unexpected death.

Research has shown that people with epilepsy do not always receive treatment. A recent study found that one-third go untreated for three years after a diagnosis.

“Many people have epilepsy and don’t seek out treatment because they don’t know what the options are,” said Dr. Graf. “Getting the word out is the most important factor to reducing that lag time between diagnosis and treatment.”

The main options for treating epilepsy are medications, surgery, and diet, according to Dr. Graf. With medications, up to 70% of people can become seizure-free. If medications are unsuccessful, surgery becomes an option. Diet therapies are also effective, but are difficult to maintain consistently, Dr. Graf said.

Addressing stigma

One of the challenges facing those with epilepsy is stigma, said Dr. Graf. Although understanding of the disorder has increased, misconceptions persist.

“These are normal people,” Dr. Graf said. “They just happen to have epilepsy. They should be able to live normal lives without being stigmatized and discriminated against.”

Boudreau has experienced negative attitudes about epilepsy, he said. For example, a friend joked about him being “retarded.”

“I had to kind of stop him and be like, ‘You know what you’re saying is completely, definitively disrespectful,” Boudreau said.

He couldn’t believe his friend was comfortable saying that to him. After they talked, the friend stopped using that language.

Boudreau currently works as a production assistant at a Hampton Roads TV station. He tends to stay close to home, though he likes to skateboard around his neighborhood with his dog. He is hoping to be able to drive again on October 5. He needs to go six months without a blackout seizure to regain his driving privileges.

Boudreau works as a TV production assistant. 

Recently, Boudreau spoke about living with epilepsy at the Epilepsy Foundation of Virginia, which promotes awareness about the disorder.

“It’s very easy for someone to want to hide this kind of thing,” Boudreau said. “When you do meet somebody with the disease, don’t use it as the defining factor of who they are.”

If you have epilepsy or know someone who does, consider seeking treatment through the Sentara Epilepsy Center.